Cancer researcher-turned-patient starts Facebook group to tackle complex world of clinical trials

Five years ago, the clinical trial data on a cancer drug that Dr. Tom Marsilje had co-invented had just been presented at a health care conference when he received news that would forever change the way he approached the disease. Marsilje, a Novartis cancer researcher whose longtime focus was lung cancer treatments and clinical trials, was diagnosed with incurable stage 4 colon cancer.

“I am more optimistic now than I was before in terms of opportunities,” Marsilje, now 45, told Fox News. “Medical research has advanced so much in five years — when you’re initially diagnosed, even when you’re a cancer researcher, there’s a human nature of fright.”

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Like millions of patients before him, Marsilje, a father of two, turned to ClinicalTrials.gov in search of a potential treatment. While the patient in him was overwhelmed by the complexity and sheer enormity of the more than 1,200 hits his search returned, his scientist side was inspired to find a way to simplify the challenge of finding appropriate clinical trials for others. From early on in his illness, Marsilje learned to compartmentalize the patient part of his brain from the scientist part. He started a blog to put his personal patient story into scientific terms that anyone could understand.

“There are other places on the web where you can get layperson perspective, but I’ve got skin in the game,” said Marsilje, of San Diego. “Looking at these trials for my own potential benefit, I realized it’s unfair for me to have this information for my own benefit — why should I not share that with the rest of the world?”

He took it another step forward and expanded onto social media, joining other experts who volunteer their time to help members of “COLONTOWN,” a closed Facebook group where patients can ask questions about trials and learn more from researchers and doctors willing to talk it through with them.

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“It’s a private Facebook group where all we do is talk about colorectal cancer clinical trials 24 hours per day,” Marsilje said.

He recruited other scientists and professors of various expertises to help the more than 800 members of the group. The end result, he said, is hundreds of patients being exposed to potential trials that may fit their specific cancer, presented to them in a way they can understand.

“They have a basic understanding of [the trials] from our explanation, we give them a PDF to take to their oncologist, and then they can say, ‘Here’s a list of trails nearby I’ve got some interest in, here’s papers of what the trial is and how it’s hypothesized to work, can we have a medical discussion about it?’” he said.

Marsijle, whose personal blog has been translated into six languages, said the positive feedback received in COLONTOWN is not only from the patients but from oncologists as well. He said the group gives them the opportunity to fill some of the gaps in the world of clinical trials through hands-on education rather than waiting for patients and doctors to find the information on their own.

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“What’s really groundbreaking about it is that we’re doing it for colorectal cancer, but there’s nothing colorectal cancer-specific about it,” he said. “It can be applied to any cancer; it’s potentially a real hacking of the system to really bring social media into productive use — that’s the single most exciting thing about it.”

Personally, Marsijle is awaiting word to see when he can begin a Phase 1 immunotherapy trial he was recently accepted into. It was initially scheduled to begin in February, but during a pre-trial checklist doctors found medical issues worth investigating. He has had to undergo chemotherapy and is facing a PET scan before he receives medical clearance to begin the experimental treatment.

Through it all, Marsijle said he’s relied on his newly formed, tight-knit group of stage 4 cancer friends who know the reality of their diagnoses.

“We’re battle-hardened,” he said. “I have friends that die on a regular basis; we’re all facing the fight of our lives.”